A meeting in a park in Southport, a suburb in Queensland, Australia, of a group of patients who’d been diagnosed with lymphoma led to the formation of Lymphoma Australia in 2004.
“These patients felt there was an unmet need for information that focused specifically on lymphoma,” said Sharon Millman, the chief executive officer (CEO) of Lymphoma Australia.
“My mother was the founding president of Lymphoma Australia. She’d been diagnosed with follicular lymphoma and so I got involved with the organisation as a volunteer to help my mother out,” she said.
About five years ago, the board of Lymphoma Australia asked Sharon to take a paid position with the organisation and she then became the CEO.
“While I may be the CEO, I wear many different hats. Being a small organisation, I have to do anything and everything,” she said. Sharon has one other full-time person working with her. However, she can call on volunteers to help out when needed.
“If there is administrative work to be done, then I may need the help of three to four volunteers. If it’s a fundraiser, it may be 30 to 50. It just depends on what the task is. We certainly don’t have any trouble finding volunteers,” she said.
Lymphoma Australia’s Objectives
The main objectives of the organisation are to:
• Raise community awareness about lymphoma;
• Assist with the early diagnosis of lymphoma;
• Support patients and their carers through their journey;
• Ensure patients have a good understanding of what treatments are available;
• Work with key stakeholders to get treatments to patients faster.
“As a result of our efforts, more Australians are aware of what lymphoma is but we still have a long way to go to make the disease better understood especially all the subtypes. It’s great that the Lymphoma Coalition (LC) is currently working on this,” Sharon said.
The resource materials Lymphoma Australia has and the education days it organises have also helped in raising awareness.
“Regardless of where people live, they have access to this information,” she said.
Another impact of Lymphoma Australia’s efforts has been a change in perception by other stakeholders.
“We are now seen as more of a key player in terms of meeting the needs of patients with lymphoma as stakeholders are coming to us for information,” she said.
Key stakeholders include clinicians, healthcare providers, government, other cancer organisations Lymphoma Australia works with, regulators and other groups that support patients with lymphoma.
Challenges with the Healthcare System
The two main challenges facing patients in Australia are getting an accurate diagnosis and access to treatment.
“Low awareness can lead to a scary diagnosis so we want to change that. When someone has been diagnosed, they need to understand their treatment options and get the treatment they need rather than treatment being based on where they live or the hospital they go to,” Sharon said.
Understanding treatment options is also important when patients relapse.
“When patients relapse, we don’t want them to fear that it’s the end of the road. They need to know there are more treatments available,” she said.
While it might take a bit longer for new treatments to be available, it’s not only an issue for patients with lymphoma but also for other diseases.
“It’s a budget issue. That’s where we see a role for us to advocate more strongly so the decision makers can better understand the lymphoma journey and the need for accessing the best treatment as opposed to the approved treatment,” she said.
Another area that needs improvement is access to clinical trials.
“While Australia’s access to clinical trials is okay, we’re likely not the country of choice. So, we need to improve that,” she said.
While there are challenges, Sharon is satisfied with the healthcare provided.
“We have a good healthcare system and, generally speaking, patients are well looked after,” she said.
In a given year, Lymphoma Australia holds four to six education days that either focus on a particular lymphoma subtype or lymphoma in general. These events are held in the different states in Australia with up to 200 people attending each meeting. Attendees include patients, caregivers and health professionals.
“We have local and international speakers not because we doubt the local experts, but because we want to assure patients that what’s available internationally is also available in Australia. This helps confirm that what Australia is doing is in line with other countries,” Sharon said.
“Our local experts work with the international speakers and bring everything back to the local level,” she said.
While some of these meetings are also available as online sessions, Sharon wants to ensure that the online option doesn’t stop people coming to the live event in person.
“We generally film the presentations and make them available online so people can always review the information after the meeting,” she said.
Support Tools for Patients
Lymphoma Australia provides both newly diagnosed patients and those further along in their journey with a resource pack.
“The resource pack includes a book about all the different types of lymphoma, the different treatment options and a diary so patients can keep track of all the medications they are taking,” Sharon said.
In addition to the resource pack, the webinars Lymphoma Australia has on their YouTube channel are continually updated to maintain their relevance.
Fundraising for Lymphoma Australia
During the year, many marathons as well as obstacle, swimming and cycle events are held throughout Australia to raise money for Lymphoma Australia.
“What drives the success of our fundraisers is that people want to participate but they are also passionate about lymphoma and want to raise awareness, or support the cause because they’ve been touched by it,” Sharon said.
“If it’s a walk, there might be 500 people. If it’s a dinner, it could be 300,” she said.
Sharon doesn’t think some events are more appealing or successful than others.
“I think it’s about us providing the platform to get people interested. People like to do collective things like all walking for lymphoma. It’s just good fun and we want that fun element to be there while supporting patients,” she said.
The funds raised go towards the resources Lymphoma Australia provides, redesigning and maintaining the organisation’s website, research grants, education days and Facebook groups. The main objective in 2016 is to fund a nurse who specialises in lymphoma.
“The goal of having a nurse who focuses on lymphoma will be to give patients more accurate information both at the point of diagnosis and at relapse, as well as give them information about clinical trials and new treatments,” she said.
Initially, funding will be in place for one nurse who will be based in Melbourne with the hope that additional fundraising allows for more.
Value of LC
Being a part of LC has been of tremendous value to Lymphoma Australia.
“I just think it’s great to be a part of LC. As a group of patient organisations, we’ve learnt a lot from each other and it has certainly helped us grow as an organisation. LC has helped the lymphoma cause heaps. We want to do whatever we can to help the cause,” Sharon said.
Many thanks to you, Sharon, and Lymphoma Australia for all your efforts to help those with lymphoma in Australia and to raise awareness about the issues confronting patients with this cancer.